Embracing My Journey with Spinal Muscular Atrophy

As the last‑born daughter of Thomas and Nombulelo Sidzamba, I, Zintle, never imagined how dramatically my life would change after being diagnosed with Spinal Muscular Atrophy (SMA) Type 4) in 2015. SMA Type 4 is a rare genetic disorder that affects the nerve cells responsible for voluntary muscle movement, causing progressive muscle weakness and atrophy.

Before the Diagnosis

Before SMA entered my life, I was active, energetic, and constantly on the move — playing tennis, dancing, and running with ease. But as SMA progressed, my balance weakened, and I slowly had to adjust to a new physical reality.

Starting university with a newly diagnosed rare disease was overwhelming, yet my strong character pushed me forward. At the University of the Free State, I took on leadership roles, serving on the Student Representative Council (SRC) and becoming a CuADS representative. CuADS is a programme dedicated to supporting students with disabilities by ensuring equal access to education and offering necessary accommodations.

The Power of Family

I would not have navigated this journey without the unwavering support of my family — my parents, Thomas and Nombulelo, and my siblings, Nobuntu, Mawethu, Abongile, and Zomzi. Their love grounded me. Their encouragement was the strength I needed on days when SMA felt heavier than usual.

Learning to Accept My Diagnosis

For years, I struggled to accept my condition. I hid my SMA diagnosis from friends and people I met, convincing myself that silence made it easier.

Everything changed after a heartfelt conversation with my sister, Nobuntu, who asked:

“Do you speak about your condition freely? I don’t think you’ve accepted that you’re living with SMA.”

Her words shifted something inside me.

From that moment, I began speaking openly about SMA — educating people, answering questions, and sharing my journey on social media. My honesty and courage caught the attention of my previous employer, HellermannTyton, who featured me in a global SMA awareness campaign in August last year.

Finding My Community

In May 2025, I joined SMA Europe, and it became a turning point in my life. For the first time, I felt surrounded by people who truly understood what I was going through. Instead of feeling hurt when people stared or asked questions, I turned these moments into learning opportunities.

I realised that living with SMA is not something to hide — it is something that has shaped me, strengthened me, and taught me resilience.

Growth, Confidence, and Purpose

Looking back, I see how far I have come. I am not the same Zintle I was a year ago. Today, I am confident, empowered, and committed to spreading awareness about SMA.

If you know someone living with SMA, ask them about their journey. You might learn something that shifts the way you see the world.

What does equity mean in your story?

To me, equity means having access to the same opportunities, resources, and experiences as anyone else, regardless of physical limitations. It is about fairness and inclusion — like having assistive technology, accessible campuses, or environments that allow people with disabilities to participate fully in life.

Day-to-day life

My biggest challenge was accepting my diagnosis. Being diagnosed at 20 years old was difficult, but learning more about SMA and speaking openly helped me accept my new reality. Becoming part of SMA Europe Advocacy boosted my confidence and gave me purpose again.